Month: January 2019

Stairlifts and Basement floors

Seven years ago, our family moved. We were living in a three-story house (with a drive-under garage), and everyone assumed we were moving to a more accessible ranch home. After all, stairs are not practical with a disabled child. But no. We moved to another three-story house with a drive-under garage. Why would we do that?! We moved to a cul-de-sac where our closest friends lived – my kids have literally played in the street (and surrounding woods) with their best friends for the last seven years. It’s one of the best decisions we’ve ever made.

But as Anne has grown heavier, navigating not one – but TWO – flights of stairs has become too difficult. Eric and I have been wrestling with whether to move away from our coveted cul-de-sac or figure out how to make this house work for Anne. We have spent so much time and energy brainstorming out of the box ideas – from moving to a 900 sq. ft. ranch to pricing elevators!

Exasperated from dead-end solutions, we finally turned to God and asked for help. (Obviously – this should have been our first move.) God, in his mercy, gave me an idea…and it was such a simple and obvious solution! We have a partly-finished room in our basement – right off the garage – with an (unusually large) finished bathroom. Why couldn’t we convert that room into a bedroom for Anne?

Currently, I hear the banging of floors being installed in our basement!! Anne will have her own room right off the garage with an accessible bathroom. In the mornings, I can get her ready for school and not have to get her down two flights of stairs. She’ll already be down there! Also, the bathroom has a shower stall. No longer will I have to lift her in and out of a bathtub, but she can transfer from her wheelchair to a shower chair into the shower stall that has been in our basement (unused) for the last seven years. Even the sink in that bathroom is perfectly accessible by her wheelchair. We are also installing a stair lift from the basement to the main level of the house to help ease the burden of getting her up and down the stairs.

Once again, God has provided perfectly for our every need. Why am I surprised? Not only has God provided for Anne, but also for our other kids. They get to stay close to their friends, and Kate (for the first time in her life) will have her own bedroom :)

Being a special needs parent is hard. But seeing God provide – even in these material ways – is so encouraging. Jesus loves Anne. He loves me. He will not leave or forsake us. I’m so thankful!

Update: Anne has moved down to her new room and she LOVES it!!!

Excuse me, while I grieve

This fall has been hard. It’s just grief. We’re old friends.

I think I’ve come through the other side – at least for this season. An old counselor described grief as a tunnel – it’s dark in there – but it will end. This fall’s grief tunnel was relatively short with brief holes of light – but I’m through, and I’m grateful.

Author and special needs mom, Sandra Peoples, describes three seasons of grief for a special needs parent. The first is immediately after diagnosis; the second is around puberty, and the third is after the child ages out of school – around 22.

Anne is 14 and at the end of puberty. She’s developed into a beautiful young lady, yet she still loves Daniel Tiger’s neighborhood and Candyland. She continues to read at a 1st-grade level, and her walking is increasingly laborious causing her to be confined mostly to her wheelchair. I don’t think you realize you have expectations until you arrive and life is – well – different than you expected.

I thought Anne might be more grown up. walking a bit more – maybe even reading a bit more. I expected her interests to be more age-appropriate. Actually, I don’t know what I expected, but I know those expectations have not been met.

Instead, I have a delightful daughter who loves boundlessly, connects effortlessly, and brings me a tremendous amount of joy. She’s exactly who God willed her to be. As she snuggles in my lap watching another episode of Daniel Tiger, I savor her presence. As my other children grow up and out – Anne will always be close. She’s mine, and I’m grateful :)

Boundless love

Note: I wrote this in June of 2018 – but forgot to post it…

Yesterday was the 18th of 20 days of Anne’s intensive therapy. She’s doing amazing!

When I picked her up, Anne’s therapist greeted me with the usual, “Anne worked so hard today. She walked longer and further than the other day,” and other good newsy items. But then she said, “But… Anne got angry and screamed at us. To distract her, I asked Anne if she ever screamed at you. She said, ‘I never scream at my mom. EVER.'”

Ha!

As her therapist shared this story, we both laughed as I described how Anne unleashes her anger on me via screams, bites, hits. Then her therapist made a wise observation – ALL children save the worst for their moms. No matter the diagnosis or lack there-of – it’s the privilege of moms to love their children at their worst.

But it’s also the privilege of moms to enter into the deepest part of their children’s lives, linger with a hug, wipe away a tear, stay up late with when they’re teens, watch them fail, and coach them into adulthood. In other words, we know our kids best – ALL of who they are – the best and the worst – and we love them anyway :)

Anne’s brain injury leaves with her little ability to filter her thoughts and emotions. She’s slowly improving in filtering around others, but when she is with me, I get ALL of her. ALL of her needs, ALL of her emotions, ALL of her love. It’s a little overwhelming. Anne’s anger is IN-TENSE. But on the other hand, her love is intense too. My day is filled with spontaneous, unsolicited declarations of love.

I love my time with you, mom.

You make me feel comfy, mom.

You’re beautiful.

I love you, mom.

As much as I love her, I swear she loves me more. Not many moms can say that. I’m blessed :)